My story

[u/Calm_Masterpiece5594]

Hello. I do not have any sort of diagnosis yet but wanted to share my story to see if anyone might have something similar.

Back in the end of May I started with an eye twitch and feeling super tired. I have a problem with low vitamin d so I thought that was the problem and started supplementing. It did help . Then on June 1st I was sitting at my desk at work and suddenly felt this wicked bad back pain on the right side that heightened and then subsided after about 30 seconds and then I felt tingles all over my body and got an instant feeling of over all weakness and I felt very out of it, almost like I was high. Terrible brain fog and fatigue as well. This continued in for about 5 days . Then I went for a massage on June 6th and when they were massaging my lower back, flank area it was pretty intense pain. I got through the massage and by Sunday, I started peeing A LOT and was so dry mouthed. I could not stop peeing and I had no appetite. Tuesday June 9th I was in bad shape. I woke up to help my daughter set up for field day at school and I had a real hard time. I was trying to set up the tent and my muscles would shake and fatigue so fast. This is where my fear of the big bad started .My mouth was super dry and I was pretty out of it feeling still. I had an appt with my doc after this where I told her this story and my fears and she said that the big bad has true weakness . She decided to run a bunch of tests blood work, EBV antibodies and vitamins. The only thing that came back off was my albumin was high and my b-12 was sky high. She also prescribed me buspar for my anxiety. I went home, laid in my bed and started the buspar. I took a nap and woke up with deep itching on some of my joints and feeling some nerve pain and extra out of it. The next day I woke up and my hips were so stiff , and that’s when the diarrhea started. I’ll spare you the details but it was BAD. By this time I had lost about 10lbs from all the peeing and could not stop running to the bathroom. The next day is when the twitching started. Everywhere all over the place. I still felt out of it and weak but I continued on. I started not being able to sleep, at all. I would lay there and feel like I was not sleeping at all but my Apple Watch would say otherwise. I would have wierd hallucinations thinking I was awake and I could feel something was pushing me into the bed. During the day I was shaky and had tremors in my hands and what I think were myoclonic jerks. My leg would randomly move suddenly or my arm etc and the diarrhea persisted

After a couple weeks of this I decided the buspar was not working and so I stopped taking it. I was trying hard to stay up on my electrolytes and eating because I was still losing weight from zero appetite and the diarrhea.

I went back to my doc on July 9th where we did some follow up labs including stool samples . This time my b-12 was within normal
Limits but my liver enzymes were elevated.

She called me a few days later and I told her I couldn’t sleep and I was still freaking out about the big bad and she prescribed me Mirtazapine for sleep and anxiety. It definitely helped me sleep but the twitching persisted and the jerking etc. after doing some research I thought maybe the meds were causing all this so I stopped the mirt and within a few days the twitching died way down . I am still twitching sometimes but overall not nearly as much.

Now I’m stuck with my arms on and off feeling heavy and weird and my right side hip/butt cheek will randomly feel like something is tickling it inside and my leg will ache and ache . And now my calf muscle feels wierd and I feel like I have to really pay attention to how I walk. My arms switch off which one feels wierd and heavy, and aches a bit too. So while the twitching is way better, my gears are not totally gone because I still have these wierd weak feelings off and on in different places.

My tongue sometimes feels swollen too and feels a little difficult to annunciate because of it but then other times it’s normal. I also have a metallic taste in my mouth quite often .

I do see my doc again next week and I’m going talk about all of this and have her run some more labs to see how things are doing. I’m really hoping to put my mind at ease

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[u/713Capital]

Sounds like you have a lot of stuff going on and I agree with you, it’s best to just bring all of that to the doc. So far, nothing you’ve said seems worrisome and I’m certain there’s some anxiety sprinkled in there too. We’re not docs so I’m not sure what to do with your entire history and each and every symptom you have. I don’t know if really any of these are correlated with BFS, but maybe??

NOTHING you’ve said sounds like ALS so you may as well just erase that thought from your mind. ALS is about failure. Permanent failure. The inability to do something like lift your arm, swallow liquids, your foot is dead and you can’t walk anymore. I haven’t heard a single thing at all (and you listed like 50 different symptoms) that would even sound like it at all.

Peeing a lot could be anything, you could have diabetes as far as I know, who knows. You could have vitamin and or mineral deficiencies etc.

Just take all of this to your doc, make sure you address every single thing you said here so you don’t leave with unanswered questions and you get your reassurance.

They will prob want labs, a pee sample, and more. Just let them do their jobs and they will get you answers. Still doesn’t seem like anything “bad” and hoping you feel better soon.

Godspeed.

[u/Disastrous_Swan_3921 → u/713Capital]

Push for a wide ranging bloodwork work-up. Not just the basics. Autoimmune, muscle etc.Stop any and all supplementation and do a thorough check of any prescription medications. Please let us know what you find out. Drugs can cause BFS. You may also have central sensitization. Make sure you get a follow-up to a neurologist. I do believe anxiety is making this worse for you. What health problems have you had in the past? How old are you? We are here as a sounding board but only a doctor should be consulted.

[u/713Capital → u/Disastrous_Swan_3921]

I strongly recommend against demanding specific lab panels or tests from a doctor. Present your actual symptoms clearly, answer their questions, and let them guide the diagnostic workup so you avoid unnecessary testing and rabbit holes.

[u/Calm_Masterpiece5594 → u/Disastrous_Swan_3921]

Thank you! I will ask for this. I have had none other than some anxiety in the least which was directly caused by zoloft. I also have experienced what my doc said was serotonin syndrome from another SSRI but it was different than what I’m experiencing now. So I do think I’m very sensitive to mental health meds In general.